The illustrator also draws a picture every day to keep the memory of the mother suffering from Alzheimer's disease
"I Remember": Use a paintbrush to resist forgetting
Not long ago, the movie "Father Trapped in Time" moved many audiences at home and abroad.
Many people felt sorry for the father who suffered from Alzheimer's disease (also known as a type of dementia) in the film.
Recently, the book "I Remember" published by Yuefu Culture has once again brought Alzheimer's disease into the reader's field of vision using a combination of painting and text.
Compared with the artistic treatment of the film, "I Remember" shows the life of people with Alzheimer's disease and the mentality of their families in detail.
The author of "I Remember" is Yilin. She is a freelance illustrator who once wrote the picture book "Let's Play with Children".
Before 2017, most of the paintings were based on ethnic minorities and folk customs. In recent years, the direction of creation has shifted to themes of aging, disease, death, and intergenerational relations.
The change of Yilin's creative direction is related to the death of his father and Alzheimer's disease of his mother.
After the death of Yilin's father, she took care of her mother with her sister Qingya and sister Xiaowan.
Yilin believes in the power of art. She picks up a paintbrush and draws a picture every day to help her mother save a backup world and resist forgetfulness.
So, if a loved one has Alzheimer's disease, what can we do besides company?
Recently, Yilin said in an interview with the Beijing Youth Daily that in the face of Alzheimer’s disease, love alone is far from enough, and it is necessary to strengthen in-depth understanding of the disease.
In the process of recording and thinking, she discovered that the essence of love is the interdependence of life; caring for the elderly is actually helping us.
Me and father
It turns out that my complex emotions also contain grievances against my dad
Now when he mentioned his father, Yi Lin would still sigh slightly, and his eyes became wet in an instant.
The last part of Yilin's father was spent in the hospital.
Her father was forced to be admitted to the hospital due to failure of the heart, kidney and liver.
"Dad has been resisting going to the hospital... Maybe he has already felt that the end is approaching and he said that he will die at home. He used a hunger strike, removed the needle, and refused to treat us. He achieved the goal of being discharged from the hospital, but only two days after returning home. Being tortured by illness, he offered to be hospitalized." Yilin wrote in the book.
In May 2018, the doctor told the three Yilin sisters that their father was running out of time, and asked them to make a final farewell as soon as possible.
At the time, Yilin suggested that the three sisters should communicate with their father what they wanted to say and what they explained.
"But when I faced my dad, I didn't know what to say. I was thinking that if I didn't paint my dad, I would never be able to paint him again. My sister Qingya comforted me and said, let's paint. Dad still likes me to draw. Finally, I drew a sketch. This is my way of saying goodbye to my father." Yilin recalled.
Later, after reading "The Best Farewell: Common Sense About Aging and Death", Yilin learned that most elderly people do not want to go to the hospital before they die, but are willing to stay at home. It's the same in Fang culture.
It is also mentioned in the book that when the elderly are dying, they should not hear what others say. Although they are still breathing, they are not conscious, as if they are in a state of deep sleep.
Yi Lin always felt that he should read this book earlier, so that he could understand his father better when he was sick, and would not have so many complaints against him.
Complaint is a word often mentioned in Yilin's emotions.
After bidding farewell to his father, Yilin was immersed in a complex emotion for a long time.
She was thinking of her father all over her head. While sorrowing, she still had grievances, self-blame and regrets...
Until this year's Tomb-sweeping Festival, Ye Neighbor still has such a state.
Before going to the grave, she prepared a paragraph in her heart, wanting to tell her father that her book "I Remember" is about to be published, and I hope he can like it.
However, Yi Lin originally thought that he could proudly say the words in his heart, but he did not expect that he would still be unable to say a word in front of the tomb.
Yilin just knelt in front of the tomb all of a sudden, howling and crying.
"My grievance is that I always want to be recognized by my dad. My dad is a soldier and has strict education for us. He likes elder sisters and younger sisters the most, and I am the most naughty. When I was young, I didn't call him'dad'. When I saw my father came, he said that it was'that person' who came. He didn't approve of my paintings and didn't like the cartoons I drew. Therefore, it is difficult for me and him to have a close state, and I can't tell in front of him. Talking is the norm," she preached.
During the time when Yilin's father left, she found an emotional outlet, and that was to start painting her father.
She began to reminisce about her father's life when she was a child, using black and white to reproduce their happy time on drawing paper.
Memories such as "Dad is a cobbler", "A strongman on the basketball court", "Dad is a tinker", "Dad taught us to catch and fight", etc., are vividly on paper.
"This book was originally meant to be about Dad, but later things made me pay more attention to my mother's condition." Yi Lin said.
Me and mother
Mom’s “I still remember” made me cry with joy
Yilin's mother's life has become different.
She did not express excessive sadness due to the departure of her husband, but was more indifferent to everything, sat down all day, and seldom spoke.
In order to help my mother adapt to the days without a wife as soon as possible, the three neighboring sisters have their own division of labor. "My sister accompanies her mother to play chess and walks, take care of her in life, and also train her to do what she can; I coax her to write and draw. Exercise your mind; my sister plays games with her mother, teaches her mother to dance finger dances, and trains her mother's reaction ability."
They had long suspected their mother's illness, because the mother's illness had symptoms in 2015.
In the winter of 2015, the three sisters discovered that the mother’s "unstoppable smile" situation became more serious. After consultation, she realized that this was a symptom of brain atrophy, which may cause dementia in the elderly.
Yilin began to ask her mother to read more and draw more, hoping to delay the process of brain atrophy.
It is a pity that these things have not persisted, and gradually gave up.
In the summer of 2018, my sister Qingya took her mother to Beijing.
The three sisters began to live with their mother in Beijing for a while.
Yilin believes that painting can comfort the soul and help exercise the body and brain. She once again strongly advocated that her mother pick up a paintbrush and insist on painting.
Under the supervision of her sister, Yilin's mother painted almost every day for a long time.
However, for a period of time after arriving in Beijing, her mother became like a child, always requiring someone to accompany her, especially afraid of loneliness, and doing anything rarely lasted for five minutes.
Sometimes, my mother picked up the paintbrush and painted for two minutes, then got angry and preached: "It's finished! There's nothing else to do!"
"At that time, I almost blindly believed that art might bring miracles, and I thought this might be the only way to get to my mother's heart." Yi Lin suddenly saw hope.
Her mother was very happy when she saw the story of Yilin's parents back then, saying: "You paint me and your dad now, it's good! I will applaud you!" Yilin thinks of this, maybe every day Draw a past event for mother, chat with her about the past, stimulate her memory, and may help her delay brain atrophy.
One day, Yilin showed his mother two pictures of his parents’ performance on stage when they were young. After reading it, his mother pulled Yilin and said excitedly, "I remember this."
"My mother's "I still remember" made me cry! In order to hear my mother say "I still remember", I painted one by one, and then I painted this series of paintings. It's called'waking up mother's memory'." Yilin said.
However, when the sisters and mother talked about a few classic stories in the family, the mother's performance made the daughters panic.
They told the story of their father proposing to their mother, telling the story of lying when they were children and they were seen through by their parents... Yilin's mother always said blankly: "I don't remember."
They decided to take their mother to see the doctor again. They wanted to know the extent of the mother's brain atrophy. Unexpectedly, the mother was diagnosed with moderate-to-severe dementia, which is a mixed type of Alzheimer's disease (AD) and vascular dementia.
In addition to losing his memory, Yi Lin's mother's temperament changed drastically.
She suddenly grew appetite and couldn't help looking for something to eat.
She stole snacks, took out a bowl of raw mushrooms in the refrigerator when no one at home ate them, and even ate raw wontons, raw pumpkins, leftovers... "I have read some information and learned about this disease. It can also make people suddenly become emotionally indifferent, listless, emotionally depressed, melancholic, selfish, silent, lack of initiative and motivation, and have no interest in anything, slurred speech, changes in eating habits, loss of shame, Regardless of personal hygiene, judgment and vigilance are gradually declining... Moms have been recruited without exception." Yilin introduced.
My sister and me
We sometimes wonder if my mother has been misdiagnosed?
Because Yilin and his sister Xiaowan are working outside, the burden of taking care of their mother is mainly borne by her sister Qingya.
Whenever she met others who praised her filial piety, her mother would choke and say, "Yes, I'm partnering with my eldest daughter!" When they said these things, the three sisters thought that their mother was no different from normal people.
One night, Yilin and Qingya accompanied her mother to watch the starry sky on the balcony. Her mother pointed to the moon and said one word at a time: "Look, the moon is more than half way out, and there are stars in the sky over there. If you go outside to see , You can see the stars in the sky. Look at the house on the opposite side one by one, and there is light on each floor... These are not visible in the hospital."
Yi Lin feels that these sentences from her mother are connected together, and it is completely a realistic and beautiful poem.
"At the time, this made me completely unable to connect this old lady with Alzheimer's disease. We sometimes wondered if my mother was misdiagnosed?" Yilin recalled.
In the eyes of the three sisters, the mother sometimes becomes a big baby who can't do without people, and sometimes it is very warm.
For a while, my mother became very silent. No matter what the three sisters said to her, she only responded by shaking or nodding.
In order for her to speak, the three sisters always racked their brains to find a way.
Among them, one of the questions is the master key. Any time you ask her, she will answer it very seriously, with a very vivid expression and bright eyes.
The "Master Key" is: "What is the proudest thing in your life?" She always replied: "Just give birth to you three girls!"
Yilin still uses paintings to record his mother's life.
In the book "I still remember", a large part of it is about the daily life of her sister Qingya taking care of her mother.
Qingya went from doubting whether her mother was really ill to accepting reality, from taking good care of her to a gradual collapse...showing readers the mental journey of her family in caring for people with Alzheimer's disease.
For example, Yilin painted a "Sister Fancy Acting Dafa", which reads: Mom will go to bed at 8 o'clock in the evening, and the sister and sister can't interrupt them anyway. In the end, the sister had to resort to assassin.
"Mom, my stomach is uncomfortable!" "Mom, I have a backache!" "Mom, you are a mother, you have to care about my body..." Mother hugged her sister, with a kind smile on her face.
Yilin also recorded the moment when her sister Qingya collapsed.
My mother started an "infinite loop" mode.
Regardless of day and night, she always walked back and forth, kicking...tapping...Qingya kept breaking through the limits of her patience, and her emotions finally broke out.
The Qingya in the painting is also the Qingya in reality, crying in disintegration: "Can you sleep peacefully in bed for a while?" "I take care of you very hard every day, I can't sleep well at night, and I can't sleep during the day!" What should I do!" "I know this is a symptom." "I shouldn't lose my temper at my mother!" "I can't help it! I'm so depressed!"...
"Sister needs a rest too much!" Yilin sighed.
Qingya is not only physically exhausted, but her spirit is also greatly affected.
Yilin wrote: “Once she sees her mother’s condition has not improved or even been declining, she will feel sad and disappointed. An invisible pressure and bondage suffocates her sister, and these negative emotions are naturally passed on to her mother. This is a vicious circle."
From Yilin's point of view, my sister stays at home all day to take care of her mother, and gives up her favorite yoga and dance. She will feel out of touch with society, and will inevitably produce a series of negative emotions such as low self-esteem, anxiety, and denial of self-worth.
In order to prevent their sister's emotional and physical condition from being overwhelmed, they decided to send their mother to a nursing home in Changsha, Hunan that specializes in dementia patients.
Now, Yilin is still conceiving another book on dementia. She wants to tell from the perspective of her sister how to deal with people with dementia in the family.
I
Love is not enough
"Why do I feel that I don't love my mother more and more?" Qingya once said to Yilin.
Yilin knows that her sister does not love her mother, but that love has been consumed in various situations.
On September 21, 2019, Yilin wrote a tweet "As long as there is love in our hearts", the last sentence of the article is: "The illness is definitely irreversible, and the burden will definitely become heavier, but as long as we have love in our hearts... …" And now, Yilin is more and more aware that love alone is not enough.
Yilin believes that, on the one hand, it is necessary to build a better understanding of Alzheimer's disease, on the other hand, it is because of records that make it necessary to observe and think.
Yilin concluded that her observations were carried out along the process of "seriously observe-discover the problem-explore the root cause-find the method-solve it in practice-record and reflect-objectively evaluate".
When she treats her mother with this attitude, what she really faces is to explore a set of ways to deal with aging and death, which will make the matter of taking care of her mother have social significance and reference value.
In 2019, Yilin joined the exchange group of "Good Friends with Dementia-Family Support Group".
In this group chat, in addition to the family members of people with dementia, there are also many experts, medical staff, and very experienced nursing staff who specialize in dementia research.
When Yilin shared his mother's behavior, many people said that they had experienced it. They encouraged each other in the group and provided psychological support.
Sometimes, for things that you don’t know how to handle, friends and experts in the group will make corresponding suggestions based on their own experience and knowledge.
For example, how to use diet therapy to solve the problem of constipation in the elderly, how to teach the elderly to play games, how to alleviate the psychological problems of family members and so on.
These reliable messages make Yilin feel warm.
In order to better understand dementia, Yilin participates in the online training of "Friendly Messenger of Dementia" to learn more about dementia.
In May of this year, Yilin began to participate in training and became a volunteer.
She said that although the term "dementia" does exist as a medical term, when facing patients and their families, try not to add stigma to them.
Therefore, people should call "dementia" as "dementia" as much as possible. There are many types of dementia. Everyone has a misunderstanding that "Alzheimer's disease" is equivalent to dementia. In fact, "Alzheimer's disease" "Silent disease" is just one type of dementia.
"Before, I told my mom the story between her and dad. She couldn't remember it. I couldn't accept it emotionally. I used a accusing tone to ask my mom and said, "I just don't remember." Just let it go. Later I learned that it is taboo to use such a rough way to ask questions, and even the sentence "Do you remember...?" should be avoided as much as possible." Yilin shared.
Yilin also wondered to herself whether it was of any practical use to record all of this with a paintbrush.
Through her own study, she understands more that these records are like vaccinations, which will let everyone know more about the symptoms brought about by the disease.
"For myself, painting with my mother was originally intended to keep my mother’s memory. I didn’t expect that when the beautiful and warm pictures in the story faded by time became clear again, it softened my increasingly numb heart. And it also helped me untie my heart knot for many years. My mother's illness is developing and my mentality is also changing. I discovered that the essence of love is the interdependence of life. Taking care of the elderly is actually helping us."
By Han Shirong, our reporter